Any researcher who sends us samples becomes part of an information system which includes access to CIBERER databases on the disease, research and treatment of this pathology, whenever available (see Information Service on research connected with the samples sent).
A Biobank can be defined in many different ways. According o the Biomedical Research Act (Act 14/2007, dated 3rd July), a biobank is a public or private non-profit-making establishment which has a collection of biological samples intended for diagnostic purposes or biomedical research and organized as a technical unit according to quality, order and allocation criteria.
In practice, a biobank is a research support platform acting as a meeting point between donors, clinicians and researchers, with the aim of ensuring safe and effective use of biological samples and associated data.
Its purpose is thus to further and facilitate studies in different areas of biomedical research, of vital importance for the development of personalized medicine.
The Rare Disease CIBER (CIBERER) is one of the eleven thematic areas of the CIBER public consortium set up under the auspices of the Instituto de Salud Carlos III (ISCIII). It was created to act as a reference, coordinate and further research into rare diseases in Spain.
It is made up of 62 research groups, attached to several institutions forming the consortium. These research groups are its basic operating units and are grouped into scientific areas. By means of this network structure the CIBERER represents a ground-breaking initiative for facilitating synergies between groups and pioneer institutions in different areas and disciplines in the field of rare diseases.
Rare diseases have a conventional definition based on the low population frequency of each of these. This has been agreed to be a prevalence of under 5 cases per 10,000 inhabitants. The concept of rare diseases is nevertheless more extensive and refers to minority, chronic, generally serious disorders, for which there are few therapeutic options available.
In a high percentage of these diseases the primary cause has a genetic origin, which is the reason why a genetic approach for understanding fundamental aspects of medicine and clinical practice is so important for this group of pathologies.